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Mayo Clinic

Discussion in 'General ME/CFS Discussion' started by GONZ0hunter, Apr 2, 2017.

  1. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    Hey,

    I just got Back from Mayo Clinic. I have stiff person syndrome cfs and a bunch of other symptoms. I have many symptoms and dr diagnosed diseases, and am ready for any questions you want to ask. AMA.

    My first statement is don't go unless you have a rare diagnosis where your dr doesn't know how to treat it. All others I would say having many symptoms is bad and outside info is bad at mayo. They only want inside info and then also randomly use that info to sabatoge you.

    The dude
     
  2. Gingergrrl

    Gingergrrl Senior Member

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    How did Mayo determine that you had Stiff Person Syndrome (SPS)? Was it based on anti GAD65 autoantibodies or an EMG test or something else? I was also curious how they determined which symptoms were from SPS vs. ME/CFS since it sounds like they gave you both diagnoses?

    As part of your SPS, do you have a very exaggerated startle reflex? Will they be treating you with IVIG or something else?

    Thank you in advance for any info!
     
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  3. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    I had stiffman prior to mayo. Neuro did have gad 65 plus eeg and I had results and a note prior to arriving. They didn't trust the eeg but didn't want to repeat it. All notes say "stiff man" . So they didn't take it serious.

    I already had ivig and to be honest have a much better team here. Mayo committed to having drs meeet about me. This never happeded or will happen. They don't do this as a general rule. Just share notes.

    I consider that to be a bad thing. Many details are missed
     
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  4. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    I have un-retractable muscle spasms. Tha musckes tear ligaments free, collapse lungs, rip organs free etc.

    I had a bad infection that morphed into a superbug. The hospital was able to knock it down with abx targeted for that infection via iv. I also have a weakened immune system diagnosed locally.the ivig was for that. The stiff person syndrome dr specialist said I shouldn't have contracted or shown symptoms of stiffman because I was already on ivig
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    Do you mean that you came to Mayo with a pre-confirmed diagnosis of Stiff Man Syndrome (SPS) from another Neuro but Mayo did not take this seriously?!!! WTF is wrong with them? (If I am understanding you correctly).

    When you say much better treatment "here" I assume you mean NOT at Mayo?! (am not asking where you are being treated, just wanted to clarify that you meant not at Mayo). Lately I keep hearing one horrible thing after another re: Mayo. I have never been there but have had some blood tests sent to their lab. I think their lab tests are solid but that's about it.

    Good God, I am so sorry to hear that. We thought I might have SPS (prior to IVIG) b/c I test positive for GAD65 from Mayo's Lab and was having this insane startle reflex that would trigger muscle spasms (but not to the level that anything tore) and a possible startle seizure. Since IVIG, all of this has 100% disappeared.

    That is crazy IMO. I suspect that I did not have SPS but had a lesser version of some of the symptoms due to the GAD65 but the IVIG temporarily reduced this auto-antibody. Do you know how high your GAD65 was? Mine was 1.6 and above 0.02 was positive so it was high but not insanely high.
     
  6. kangaSue

    kangaSue Senior Member

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    Brisbane, Australia
    @GONZ0hunter What other antibodies did they test for, did they run a full Paraneoplastic panel or Limbic Encephalitis panel on you in case there's some crossover with either condition?
     
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  7. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Can you describe what the Mayo process was like?
     
  8. Quemist

    Quemist

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    Savannah, GA
    I just left Mayo his week, been there on and off for about six weeks.
    I felt like I got good care but I was disappointed in their approach for treatment. Every doctor had different recommendations and I don't believe they were able to agree on a treatment.
    The workup was very fast but didn't do a lot of blood testing.
     
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